Living with Lupus: 2 years later

Start of PCT

Mid-late April will likely always be a conflicting time of year for me. It reminds me of the time I set off on my first solo, independent adventure: the PCT (2015). It is also the time many people do start their big hikes and so I’m regularly reminded of it. However, I received my diagnosis in mid-April (2016) and there is pretty good reason to believe the PCT was, at minimum, a contributing factor (giardia)…so…this time is conflicting.

Anyone who has experienced a critical illness can probably tell you the exact date on which they received their diagnosis; a twisted kind of anniversary date individuals perpetually know. For those close to me, to say it’s been a difficult couple of years is an understatement. Having your body go from being healthy and strong to instantaneously struck down is an experience few people will ever know (hopefully). We expect a general decline as we age: muscles a tad more sore, a loss of overall strength or tone, and injuries taking a little bit longer to heal from. It’s the agreement we made. To have it viciously yanked away is not something anyone expects.

I wasn’t really sure where this post was going to take me when I started it; a general update perhaps or maybe discussing how I balance outdoor activity and a chronic illness. And yet, it’s become clear to me that this is about trying to encourage you to try new things or push yourself just a little bit more because you just don’t know what or when something will happen. Lupus has no cure. My life will forever be about managing my body. I have had to learn to take advantage of the days I feel amazing and accepting of the days I don’t because I do not know what the next day will bring. And here’s my piece of life advice: neither do you.

Adam and I (and Shasta!) specifically chose to cycle across Canada (2010) because we both clearly recognized and valued that we had our health – it was truly a motivating factor for us to embark on that trip. We were afraid; nervous, of course. We also knew we could never count on this opportunity arising for us again. 8 years later, that wisdom continues to ring true for me. Neither of us could have predicted what happened to me two years ago and it will ultimately shape the rest of my (hopefully long) life. Every morning I wake up, assess myself, prioritize and plan my day to a level of detail many of you would never even think about. Every month, I hope my lab work continues to improve. All the while, preparing myself that I may have to let any plans I make go if my body chooses to disagree. I’ve been thrust into living in the moment: for better and for worse.

Take advantage of the time you have and try something you’ve wanted to do. Hike to the top of that mountain, run that race, ski that line, hit that jump. It doesn’t matter how high it is, long it is, steep it is, or big it is: just take advantage of your ability – whatever level it may be – and don’t waste the time you have.

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